Assessing and Scoring Life Quality
Andrew Y. Finlay
Division of Infection and Immunity, Cardiff University School of Medicine, Cardiff, UK
Search for more papers by this authorAndrew Y. Finlay
Division of Infection and Immunity, Cardiff University School of Medicine, Cardiff, UK
Search for more papers by this authorPeter Hoeger
Search for more papers by this authorVeronica Kinsler
Search for more papers by this authorAlbert Yan
Search for more papers by this authorJohn Harper
Search for more papers by this authorArnold Oranje
Search for more papers by this authorChristine Bodemer
Search for more papers by this authorMargarita Larralde
Search for more papers by this authorVibhu Mendiratta
Search for more papers by this authorDiana Purvis
Search for more papers by this authorSummary
Measurement of the impact of skin disease on the quality of life of children is important to inform clinical decision taking, for research and audit purposes and to demonstrate the impact of skin disease compared to other conditions. Quality of life measures for children are designed to be disease specific, dermatology specialty specific or generic, usable across many specialties. There are measures for teenagers and for infants. Major life-changing decisions influenced by skin disease can be recorded. There are questionnaires to measure the secondary impact on the quality of life of other family members of having a child in the family with skin disease, a burden that is often unrecognized. These measures are also disease specific, dermatology specific or generic. Utility measures that allow calculation of economic impact of skin disease in children are being developed.
References
- Finlay AY. Dermatology patients: what do they really need? Clin Exp Dermatol 2000; 25: 444–50.
- Naldi L. Health-related quality of life: from health economics to bedside. Dermatology 2007; 215: 273–6.
- Pickett K, Loveman E, Kalita N et al. Educational interventions to improve quality of life in people with chronic inflammatory skin diseases: systematic reviews of clinical effectiveness and cost-effectiveness. Health Technol Assess 2015; 19(86): 1–176,v–vi.
- Olsen JR, Gallacher J, Finlay AY et al. Time to resolution and effect on quality of life of molluscum contagiosum in children in the UK: a prospective community cohort study. Lancet Infect Dis 2015; 15(2): 190–5.
- Finlay AY, Salek MS, Abeni D et al., for the EADV Task Force on Quality of Life. Why quality of life measurement is important in dermatology clinical practice. An expert-based Opinion Statement by the EADV Task Force on Quality of Life. J Eur Acad Dermatol Venereol 2016; 31(3): 424–31.
- Chernyshov P, de Korte J, Tomas-Aragones L, Lewis-Jones S, for the EADV Quality of Life Task Force. EADV Task Force's recommendations on measurement of health-related quality of life in paediatric dermatology. J Eur Acad Dermatol Venereol 2015; 29: 2306–16.
- Solans M, Pane S, Estrada M-D et al. Health-related quality of life measurement in children and adolescents: a systematic review of generic and disease-specific instruments. Value Health 2008; 11: 742–64.
- Brown MM, Chamlin SL, Smidt AC. Quality of life in pediatric dermatology. Dermatol Clin 2013; 31: 211–21.
- Matza LS, Swensen AR, Flood EM et al. Assessment of health-related quality of life in children: a review of conceptual, methodological, and regulatory issues. Value Health 2004; 7: 79–92.
- Clarke S-A, Eiser C. The measurement of health-related quality of life (QOL) in paediatric clinical trials: a systematic review. Health Qual Life Outcomes 2004; 2: 66.
- Finlay AY. The three dimensions of skin disease burden: ‘now’, ‘long term’ and ‘family’. Br J Dermatol 2013; 169: 963–4.
- Finlay AY, Kelly SE. Psoriasis – an index of disability. Clin Exp Dermatol 1987; 12: 8–11.
- Lewis-Jones MS, Finlay AY. The Children's Dermatology Life Quality Index (CDLQI): initial validation and practical use. Br J Dermatol 1995; 132: 942–9.
- Salek MS, Jung S, Brincat-Ruffini LA et al. Clinical experience and psychometric properties of the Children's Dermatology Life Quality Index (CDLQI), 1995–2012. Br J Dermatol 2013; 169: 734–59.
- Heinl D, Chalmers J, Nankervis H, Apfelbacher CJ. Eczema trials: quality of life instruments used and their relation to patient-reported outcomes. A systematic review. Acta Dermatol Venereol 2016; 96: 596–601.
- Finlay AY. Quality of life in dermatology: after 125 years, time for more rigorous reporting. Br J Dermatol 2014; 170: 4–6.
- Holme SA, Man I, Sharpe SL et al. The Children's Dermatology Life Quality Index: validation of the cartoon version. Br J Dermatol 2003; 148: 285–90.
- Heinl D, Prinsen CAC, Drucker AM et al. Measurement properties of quality of life measurement instruments for infants, children and adolescents with eczema: protocol for a systematic review. Syst Rev 2016; 5: 25.
- Mokkink LB, Terwee CB, Knol DK et al. The COSMIN checklist for evaluating the methodological quality of studies on measurement properties: a clarification of its content. BMC Med Res Methodol 2010; 10: 22.
- Campbell N, Ali F, Finlay AY, Salek SS. Equivalence of electronic and paper-based patient-reported outcome measures. Qual Life Res 2015; 24: 1949–61.
- Finlay AY. © Copyright: why it matters. Br J Dermatol 2015; 173: 1115–16.
- Cardiff University Department of Dermatology. Quality of life website. www.cardiff.ac.uk/medicine/resources/quality-of-life-questionnaires
- van Geel MJ, Maatkamp M, Oostveen AM et al. Comparison of the Dermatology Life Quality Index and the Children's Dermatology Life Quality Index in assessment of quality of life in patients with psoriasis aged 16–17 years. Br J Dermatol 2016; 174: 152–7.
- Waters A, Sandhu D, Beattie P et al. Severity stratification of Children's Dermatology Life Quality Index (CDLQI) scores. Br J Dermatol 2010; 163(Suppl 1): 121.
- Hongbo Y, Thomas CL, Harrison MA et al. Translating the science of quality of life into practice: what do dermatology life quality index scores mean? J Invest Dermatol 2005; 125: 659–64.
- Finlay AY, Basra MK. DLQI and CDLQI scores should not be combined. Br J Dermatol 2012; 167: 453–4.
- Basra MK, Salek MS, Camilleri L et al. Determining the minimal clinically important difference and responsiveness of the Dermatology Life Quality Index (DLQI): further data. Dermatology 2015; 230: 27–33.
- Olsen JR, Gallacher J, Finlay AY et al. Quality of life impact of childhood skin conditions measured using the Children's Dermatology Life Quality Index (CDLQI): a meta-analysis. Br J Dermatol 2016; 174: 853–61.
- Golics CJ, Basra MK, Finlay AY, Salek MS. Adolescents with skin disease have specific quality of life issues. Dermatology 2009; 218: 357–66.
- Smidt AC, Lai JS, Cella D et al. Development and validation of Skindex-Teen, a quality-of-life instrument for adolescents with skin disease. Arch Dermatol 2010; 146: 865–9.
- Basra MKA, Salek MS, Fenech D, Finlay AY. Conceptualization, development and validation of T-QoL© (Teenagers’ Quality of Life): a patient-focused measure to assess quality of life of adolescents with skin diseases. Br J Dermatol 2018; 178: 161–75.
- Crall C, Valle M, Kapur K et al. Effect of angiofibromas on quality of life and access to care in tuberous sclerosis patients and their caregivers. Pediatr Dermatol 2016; 33: 518–25.
- Motley RJ, Finlay AY. Practical use of a disability index in the routine management of acne. Clin Exp Dermatol 1992; 17: 1–3.
- Motley RJ, Finlay AY. How much disability is caused by acne? Clin Exp Dermatol 1989; 14: 194–8.
- Layton AM. Psychological assessment of skin disease. Interfaces Dermatol 1994; 1: 37–9.
- Zauli S, Caracciolo S, Borghi A et al. Which factors influence quality of life in acne patients? J Eur Acad Dermatol Venereol 2014; 28: 46–50.
- Gupta MA, Johnson AM, Gupta AK. The development of an acne quality of life scale: reliability, validity, and relation to subjective acne severity in mild to moderate acne vulgaris. Acta Derm Venereol 1998; 78: 451–6.
- Chamlin SL, Frieden IJ, Williams ML, Chren MM. The effects of atopic dermatitis on young American children and their families. Pediatrics 2004; 114: 607–11.
- Chamlin SL, Lai J-S, Cella D et al. Childhood Atopic Dermatitis Impact Scale. Reliability, discriminative and concurrent validity, and responsiveness. Arch Dermatol 2007; 143: 768–72.
- Eichenfield LF, Tom WL, Chamlin SL et al. Guidelines of care for the management of atopic dermatitis: section 1. Diagnosis and assessment of atopic dermatitis. J Am Acad Dermatol 2014; 70: 338–51.
- McKenna SP, Whalley D, Dewar AL et al. International development of the Parents' Index of Quality of Life in Atopic Dermatitis (PIQoL-AD). Qual Life Res 2005; 14: 231–41.
- Lewis-Jones MS, Finlay AY, Dykes PJ. The Infant's Dermatitis Quality of Life Index. Br J Dermatol 2001; 144: 104–10.
- Basra MK, Gada V, Ungaro S et al. Infants’ Dermatitis Quality of Life Index: a decade of experience of validation and clinical application. Br J Dermatol 2013; 169: 760–8.
- Chamlin SL, Mancini AJ, Lai JS et al. Development And Validation Of A Quality-Of-Life Instrument For Infantile Hemangiomas. J Invest Dermatol 2015; 135: 1533–9.
- Hoornweg MJ, Grootenhuis MA, van der Horst CM. Health-related quality of life and impact of haemangiomas on children and their parents. J Plast Reconstr Aesthet Surg 2009; 62: 1265–71.
- Rauch PK, Jellinek MS, Murphy JM et al. Screening for psychosocial dysfunction in pediatric dermatology practice. Clin Pediatr 1991; 30: 493–7.
- Varni JW, Seid M, Kurtin PS. Pediatric health-related quality of life measurement technology: a guide for health care decision makers. J Clin Outcomes Manage 1999; 6(4): 33–40.
-
Hullmann SE, Ryan JL, Ramsey RR et al. Measures of general pediatric quality of life: Child Health Questionnaire (CHQ), DISABKIDS Chronic Generic Measure (DCGM), KINDL-R, Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales, and Quality of My Life Questionnaire (QoML). Arthritis Care Res 2011; 63(Suppl 11): S420–30.
10.1002/acr.20637 Google Scholar
- Fayed N, de Camargo OK, Kerr E et al. Generic patient-reported outcomes in child health research: a review of conceptual content using World Health Organization definitions. Dev Med Child Neurol 2012; 54: 1085–95.
- Bhatti ZU, Salek MS, Finlay AY. Chronic diseases influence Major Life Changing Decisions, a new domain in quality of life research. J Roy Soc Med 2011; 104: 241–50.
- Bhatti ZU, Finlay AY, Bolton CE et al. Chronic disease influences over 40 major life-changing decisions (MLCDs): a qualitative study in dermatology and general medicine. J Eur Acad Dermatol Venereol 2014; 28: 1344–55.
- Bhatti ZU, Salek SM, Bolton CE et al. The development and validation of the Major Life Changing Decision Profile (MLCDP). Health Qual Life Outcomes 2013; 11(1): 78.
- Kimball AB, Gieler U, Linder D et al. Psoriasis: is the impairment to a patient's life cumulative? J Eur Acad Dermatol Venereol 2010; 24: 989–1004.
- Linder MD, Piaserico S, Augustin M et al. Psoriasis – the life course approach. Acta Derm Venereol 2016; 96: 102–8.
- Lawson V, Lewis-Jones MS, Finlay AY et al. The family impact of childhood atopic dermatitis: the Dermatitis Family Impact questionnaire. Br J Dermatol 1998; 138: 107–13.
- Basra MKA, Finlay AY. The family impact of skin diseases: the Greater Patient concept. Br J Dermatol 2007; 156: 929–37.
- Dodington SR, Basra MK, Finlay AY, Salek MS. The Dermatitis Family Impact questionnaire: a review of its measurement properties and clinical application. Br J Dermatol 2013; 169: 31–46.
- Finlay AY, Salek SS, Piguet V. Measuring family impact of skin diseases: FDLQI and FROM-16. Acta Derma Venereol 2015; 95: 1036.
- Kondo-Endo K, Ohashi Y, Nakagawa H et al. Development and validation of a questionnaire measuring quality of life in primary caregivers of children with atopic dermatitis (QPCAD). Br J Dermatol 2009; 161: 617–25.
- Eghlileb AM, Basra MKA, Finlay AY. The Psoriasis Family Index: preliminary results of validation of a quality of life instrument for family members of patients with psoriasis. Dermatology 2009; 219: 63–70.
- Basra MK, Zammitt AM, Kamudoni P et al. PFI-14©: a Rasch analysis refinement of the Psoriasis Family Index. Dermatology 2015; 231: 15–23.
- Basra MKA, Sue-Ho R, Finlay AY. The Family Dermatology Life Quality Index: measuring the secondary impact of skin disease. Br J Dermatol 2007;156:528–38. Erratum: Br J Dermatol 2007; 156: 791.
- Basra MKA, Edmunds O, Salek MS, Finlay AY. Measurement of family impact of skin disease: further validation of the Family Dermatology Life Quality Index (FDLQI). J Eur Acad Dermatol Venereol 2008; 22: 813–21.
- Golics CJ, Basra MKA, Salek MS, Finlay AY. The impact of patients’ chronic disease on family quality of life: an experience from 26 specialties. Int J General Med 2013; 6: 787–98.
- Golics CJ, Basra MK, Finlay AY, Salek S, for the the Family Quality of Life Research Group. The development and validation of the Family Reported Outcome Measure (FROM-16)© to assess the impact of disease on the partner or family member. Qual Life Res 2014; 23: 317–26.
- Pereira FR, Basra MK, Finlay AY, Salek MS. The role of the EQ-5D in the economic evaluation of dermatological conditions and therapies. Dermatology 2012; 225: 45–53.
- Aledan M, Gonzalez M, Finlay AY. Utility measure development for children with skin disease. J Eur Acad Dermatol Venereol 2000; 14(Suppl 1): 281.
- Stevens KJ, Brazier JE, McKenna SP et al. The development of a preference-based measure of health in children with atopic dermatitis. Br J Dermatol 2005; 153: 372–7.
- Wille N, Badia X, Bonsel G et al. Development of the EQ-5D-Y: a child friendly version of the EQ-5D. Qual Life Res 2010; 19: 875–86.
- Chen G, Flynn T, Stevens K et al. Assessing the health-related quality of life of Australian adolescents: an empirical comparison of the Child Health Utility 9D and EQ-5D-Y Instruments. Value Health 2015; 18(4): 432–8.